Picking back up where I left off…… after the surgery.
I really don’t remember a lot. Honestly. She was so quiet at first and I wasn’t really sure about things like her ability to walk. I remember for her to get released she had to take all her medication voluntarily and be able to get up and walk to the bathroom and I know that took until Saturday. Voluntarily meant taking it without a 10 min session of saying no and crying and pushing it away. I can’t remember which medicine she hated so much, if it was the seizure medication or the steroids, but one of them was a huge battle. She had to take the seizure medication even though she had never had a seizure (and to this day still hasn’t) because the location of the tumor and now golf ball sized hole was in a “seizure center” in the brain.
I remember leaving the hospital somewhat unceremoniously — given the volume of visitors and family we had by our side for the 10 day stay. Of course we had to be followed by three Mayflower trucks to transport all the stuffed animals, games, coloring books, crayons, dolls and balloons. Then we had to stuff them all in her room.
It still bothered me because she was so quiet and timid. Slowly but surely the personality started to return – the same personality that at age 4 had me laughing as she came through the door of the kitchen one day singing “Fergilicious definition make them boys go loco!” She started therapy for her hand and foot where we began a long journey with Miss Kathy and Miss Christen. She and I had a girls night one night when Dave was at the fire house and Dawson was spending the night with a friend. We went to pizza hut and then got bubble gum ice cream and fell asleep watching Hannah Montana. I went back to work.
I remember the day I went back to work. It was the day of one of the many fundraisers that were ahead of us. This one was the Applebee’s fundraiser where a portion of the bill went to the “Teagan Baughn Fund.” That was another thing that made me cry – when the Dixon’s called and told us that they had created this fund – not only did I now have a kid in the little red wagon but she had her own fund. I was appreciative but also sad. We had just left therapy and we were heading home so I could go to work at 130. We got a call from one of the firefighters who said we had to see the Applebee’s so we drove over. The parking lot was jammed with firetrucks from all the agencies in the county and some from Indianapolis. We wanted to stop but Teagan was tired and grouchy from therapy so I got ready quickly and went to Applebee’s before work. There were so many people there to support our family — and this was just lunch. When Dave took the kids and went to dinner it was wall to wall people. It’s hard to let that many people know how thankful you are.
Fundraisers became a good thing. I remember the day the hospital bill came in the mail. It wasn’t technically a “bill” it was just a statement saying that the hospital had billed our insurance but in case insurance didn’t pay this was the amount we were responsible for. That bill was $110,000 and some change. I sat down on the curb and laughed. It was one of those hysterical-this-can’t-be-for-real laughs. Lucky for us we had so many people who wanted to help us because even with insurance we still owed … well a lot. And this was before the 14 months of chemo – where we had to go to Peyton Manning Children’s hospital twice a week.
We went to see Dr Goodman after they received the information from John Hopkins that her tumor was called a Pilomyxoid Astroctyoma. The most common juvenile brain tumor is a Pilocytic Astrocytoma and it’s a stage 1. Teagan’s was a stage 2 because it was considered more aggressive and its cellular make up has something that the other one doesn’t. I could actually look all the terminology up but right now it’s 815pm on Sunday and I still need to pack my lunch for tomorrow and I’d like to read a few more pages in The Girl Who Kicked Over the Hornet’s Nest. So anyway, we were talking to Dr Goodman and she was explaining some various steps. Basically that there was still a small piece of the tumor left but we would have to wait and see if it was “stable” or if it was “growing” on her next MRI. If it got bigger she would possibly face a 2nd surgery and then chemo. Chemotherapy – noun: the treatment of disease by means of chemicals that have a specific toxic effect upon the disease-producing microorganisms or that selectively destroy cancerous tissue. That’s the definition. Truth: Chemotherapy – noun: effectively poisoning your child in an attempt to save their life. Seems a little counterproductive doesn’t it? I cried. In front of the doctor. I do not cry in front of people with the exception of family and even that is a rare occasion.
I can’t really explain the not crying in front of people thing. I just don’t. I might let one single tear slide down in public (especially sad movies) but actually crying… doesn’t happen except when I’m by myself. Or if one of the dogs is with me and sometimes Dave (he doesn’t lick the tears away like Bam does :)). It’s like me telling this story. I don’t like putting my feelings and emotions out there for everyone to see. I don’t like to tell people what happened to Teagan. I guess I don’t want people to feel sorry for her. I understand why they do but I don’t want them to. I just want them to see her for what she is: yes she is a brain tumor survivor, but that’s a small part of who she is. She is a 10-year-old girl who likes to play with Barbies and baby dolls and have sleepovers with her friends where they make “No Boys Allowed” signs. She plays soccer and hates math and reads scary books. She draws pictures on the back of papers with bad grades so we won’t notice the grade. She is an absolute fish in a swimming pool and she thinks chocolate should be its own food group. Those are the things about Teagan that I want people to know and not what happened to her when she was 5.
PS – In case there was any question about her personality being fully intact…. you should read Friday and Saturday’s blogs.